Insignificant? or Major Life Change?
That piece of plastic and inflated balloon that had served as an avenue for life-sustaining nutrition had been plucked out. It has been permanently removed.
We are surprised by how sobering this procedure is turning out to be.
We think the celebration with all its jubilance will come. Perhaps that is when the site is completely healed. Perhaps that is when a period of adjustment has happened.
Just not yet.
This time is one for reflecting.
This time is one for reflecting.
This time is one for reconciling oneself with the difference.
This time is one for concentrating on the healing, for preventing infection, for keeping a “wound” clean and for laying low.
Wow! This has been literally a life-long journey. So much of life for the entire family has centered around this method of eating for one of our own.
Oh! The memories are flooding in…
Feeding a baby seat: Remember the time we thought we had the apparatus hooked up properly but ended up feeding the child seat in which she was sitting? The entire amount of food. Slowly we poured syringe by syringe entirely into the chair and not into the feeding tube. We laugh about it now but at the time it was everything but funny.
Unique dinner times: Remember the time she realized she could push on her tummy and the food being transported by gravity through a tiny tube would soar back up the tube instead of down into her tummy? One by one family members were distracted by those grunting pushing sounds. One by one we discovered the smirk on her face and the moving formula up and down – up and down – the extension tube. All at once we started laughing like nobody’s business. All of us. Rolling with laughter.
Extraordinary Siblings. Remember teaching 8 and 6 year old sisters how to tube feed their baby sister so we could leave them all with a babysitter for a few hours from time to time? They were eager and willing and adapted like ducks to water. What a blessing!
Meals through tubes in public places. IV Tube in the decorative trees, anyone? Remember when we were always looking for places to hang our IV bag full of formula so that it could slowly drip through the tubing into the tummy while the rest of us enjoyed fast food during a family outing at the Mall food court?
Interesting conversation piece.
- “Awww. What’s wrong with the baby.”
- “Is that medicine?”
- “Why are you doing that?”
- “My sister…brother…niece…mother…has a feeding tube because….”
Which led to finding locations with fewer people and more secluded tables as we were traveling from state to state for weddings, funerals, etc. Thank you, Starbucks, and random quaint coffee shops.
Informing untrained professionals. Remember the emergency room nurse heading to her infant mouth to administer Tylenol for a fever without knowing the danger of putting Tylenol into her lungs because that is where everything that went into the mouth ended up. Remember being thankful 1) for a feeding tube solution, and 2) that a parent was present to stop a potential disaster.
Good nutrition vs. bad nutrition. Remember the progression of the education of nutrition? Remember when we started reading labels and realized what ingredients were in the available formulas for tube fed kids? Remember appealing to the pediatrician to prescribe a formula with fruits and veggies? Remember throwing in the towel and deciding to puree the food ourselves because insurance no longer covered it and the cost for manufactured formula was astronomical? This is when Daddy became the mastermind of good nutrition that can fit through a miniscule tube and gained hero status.
She learns to tube feed herself. Remember when a dear friend who also was a tutor and life skill teacher decided she was capable of feeding herself? And it occurred to us, “why didn’t we think of that.” That one was a life changer for everyone.
And there are so many more memories. Over 24 years worth of memories that included raising four children from infancy through teens to adulthood. This wasn’t just one family member with a feeding tube. This was a family dynamic that involved every single one of us through many years and stages of development – physically, emotionally, spiritually, etc., for the parents and the siblings and the one who was tube fed.
We must give this processing its due.
For now, we remember, we caregive, we “hold still” for processing.
HOW ABOUT YOU?
Gone? Is part of your story when you or a loved one became independent of a medical device that was part of you for a length of time? Did you have similar ambivalent feelings of celebration but also a feeling of “wait, now what”?
Maybe your story isn’t about a medical device but something else that was and is no longer – in a good way.
Your own “life-change” may have recently happened or is right around the corner or somewhere down the line.
We encourage you to “be still” and allow time to process also.
With much love,
Tom and Julie Meekins
